Shared Decision-Making Needs a Bigger Push, Expert Says

Get rid of the idea that there is one 'right' medical answer

ARLINGTON, Va. -- Health systems need to do a better job of defining shared decision-making and getting doctors to use it, Harlan Krumholz, MD, of Yale University in New Haven, Connecticut, said Wednesday at the annual meeting of the Patient-Centered Outcomes Research Institute.

In medical school, Krumholz said he was told that he had to get rid of ambiguity and figure out what the "right" answer was for a patient's medical problem. "I think it's time to jettison these assumptions -- call them out, and build new and better information."

In fact, "we buy into this myth that there is a right answer, [but] two people can choose differently and both be right for the same problem if it aligns with what's important to them," he said. "How do we start a culture where conversation starts with what the reasonable [treatment] options are and why might people choose one over the other, and not 'Here's what you should do'?"

When it comes to getting patients more involved in decision-making, "'Nothing about us, without us' is a longstanding theme but one we still don't embrace enough," Krumholz said. "It's up to us to really make it a reality ... We are still far too timid in the kind of change to make the healthcare system fully responsive to the needs of people."

Of course, healthcare professionals want the best care for their patients, he added. "This is not about the profession being the villain, but a question of where we came from" in terms of physicians' attitudes. "Are we achieving what could be achieved for the people we seek to serve?"

Physician attitudes also play into the need for more shared decision-making, said Krumholz. He cited assumptions that develop in people “socialized into the healthcare profession”: that patients “expect to be told what to do” and “can’t handle the truth.”

And doctors sometimes compound the problem by assuming that people expect to be shielded from information, he continued. "It's scary to think you might die or that a procedure might be too dangerous."

He gave the example of the late physicist Richard Feynman, PhD. "Feynman's wife became critically ill early in their marriage; the doctor and the family conspired to keep the truth from her so she wouldn't be disturbed. We don't do it quite as extremely today but [we still feel] they can't handle the information."

For decision-making to become truly shared, three aspects of practice will need to change, he said. "It starts with culture. Who are we serving, and to what extent are we doing that well?"

In addition, the healthcare structure has to enable this to happen; "you do have people in the system that are fatigued ... They're finding it difficult to be the healthcare professional they aspired to be."

Finally, we need the incentives lined up, Krumholz said. "Everyone's getting pressured about the viability of the models they're in, which may not have been built by design to provide the kind of service to individuals that we would hope would be delivered."

When it comes to choosing a provider for a service, patients often have difficulty starting conversations about the topic, he said. Right now, "it's hard for a patient to ask, 'How many of [this procedure] do you guys do, and how good are you at it, and what's the evidence about it? And what is my out-of-pocket cost if everything goes well?'"

Regarding that last question, "Financial toxicity is real to the people in this country; financial adverse events can be disabling just like physical adverse events ... If we're not [addressing those], we're not helping patients make the right choices."

Another problem is that physicians often don't have the information needed to help people make the right decision, he said. "We have information absence ... people are flying blind. The current scientific enterprise cannot keep pace with the information needs of people and patients."

During a question-and-answer session, Foster Adams, a patient from Memphis, Tennessee, explained his own dilemma. "I had a situation where my family physician said I needed a pacemaker, but my cardiologist said I didn't; both ran a series of tests [on me]. How do you resolve that?"

The physicians involved should explain the underlying reasons for their recommendations and either try to come together on a decision, "or help you find someone you trust to break the tie," responded Krumholz. "This is the uncomfortable reality and we need to find ways to broker that and bridge it."

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